Monthly Archives: April 2018

Connections are now routine in every State and the large majority of them have a positive outcome, according to the 58 organ procurement organizations (OPOs) designated by the US government to oversee organ donation.

These connections, which only happen if both sides want them, generally start with an exchange of anonymous letters under the supervision of doctors. Some get no further than that. If, however, all goes well, the families can move to signed letters and then, but again only if everyone approves, to actual meetings. Against the rare occasions when something goes wrong in this carefully-planned system is the incomparable satisfaction of learning, for example, that the boy who received your son’s heart, who could scarcely walk to the door of his apartment, is playing soccer again or that the girl who had been given only a few hours to live but received his liver now has a baby.

These are not dreamed-up examples. Both happened to us when my seven-year old son, Nicholas, was shot on the Salerno-Reggio Calabria highway in 1994 and his organs donated to seven very sick people. (The boy who got the heart is now dead but his family is profoundly grateful for the extra 22 years of good health the transplant gave him. The girl is now a sturdy woman of 42 with two children, one of whom she called Nicholas in honor of her little donor).

But anecdotes are unrepresentative and can be very misleading, so for an overall view I asked leaders in the American transplant community about their experience. This is what some of them told me:

1) “A recent review of our data indicates that about 52% of donor families will connect with a recipient (either by receiving a communication from or sending a communication to) within the first two years of their loved one’s organ donation,” says Alexandra K. Glazier, President & CEO, New England Donor Services, the OPO which covers the six New England states, home of one of the greatest concentrations of top-class hospitals in the world. “Many donor families and recipients have a natural interest in connecting with one another and that is experienced as a positive aspect of the donation and transplant process.”

2) Tom Mone, CEO of OneLegacy, the largest of the 58 organ procurement organizations, whose area covers twenty million people and two hundred hospitals in California, points out that actual meetings are only a small percentage of the total connections and the risk of something going wrong is the greatest but even there he says that in more than twenty years “we have no cases where families regretted meeting.”

3) “I am not aware of a single instance of physicians in the United States being philosophically opposed to donor families and recipients meeting.” Bryan Stewart, for 12 years communications director of OneLegacy.

4) Elling Eidbo, CEO of the Association of Organ Procurement Organizations, which represents all 58 OPOs, adds another crucial reason. “Every day, all over the United States, transplant physicians and their teams work closely with all organ procurement organizations to provide recipient outcomes and information that is shared with donor families. This happens because across the country, both transplant physicians and donation professionals understand and appreciate how important and significant these communications and connections are, including face-to-face meetings, to maintaining the critical trust and faith of their communities and society in donation and transplant. It is this trust and faith in our system that gives people the confidence to donate, and knowledge that the generous gift of life to others will be appreciated and respected with grace, dignity and sincerity”.

5) Rob Linderer, who retired a few weeks ago as CEO of MidWest Transplant Network said that in 38 years in his area, which covers several million people, he could recall only two cases where meetings between the two sides caused a problem. Two in 38 years! In one of those cases, a donor mother wanted to pay more attention to the heart recipient than the doctors thought desirable. She was told quietly but firmly she had to be less insistent and that was the end of the problem.

6) Opponents of change say there is little interest because families want to put a transplant behind them and get on with a new life. Certainly, that is true of many families and no responsible person would put any pressure on them. But families are hungry for information. Nearly 1,200 letters are exchanged between donor families and organs and tissue recipients every year through another leading American OPO, the Gift of Life Donor Program, based in Philadelphia, according to its CEO, Howard Nathan.

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Evidence is coming in from widely different parts of the world that communication between organ donor families and their recipients is therapeutic for both sides, says Reg Green, father of Nicholas Green the seven-year old American boy who was shot on the Salerno-Reggio Calabria autostrada, who is leading a campaign for a public discussion of the application of Italy’s privacy policies that prevents any communication between the two sides. He cites remarks by Anthony Clarkson, Assistant Director for Organ Donation and Nursing at United Kingdom’s National Health Service Blood and Transplant, who says communication“is a positive and beneficial experience in the vast majority of cases.”

Mr. Clarkson adds: “When asked, nine out of 10 donor families indicated they would like to hear from the recipients of their loved one’s organs. Donor families who are contacted tell us it brings them great comfort and are grateful that their precious gift of donation has been acknowledged.”

In Italy, the law enacted in 1999 forbids health service personnel from giving any information about patients donating or receiving an organ. Mr. Clarkson did not make his remarks in reference to Italy. They are the United Kingdom’s conclusions from its own experience.

They were quoted in a statement sent to the British newspaper, The Guardian, on September 29 by Dave Marteau, father of a 21-year old Englishman killed in a road accident in Palermo whose organs were donated to four Italians but whose family was unable to find out anything about them for eight years.

“It is clearthat the way Italian privacy laws are applied is causing pain to many donor families, despite the selfless decision of those families to save the lives of complete strangers,” Mr Green says.

Mr. Marteau also cites a survey at a university hospital in Brazil that found 67% of organ donation families wanted to meet recipients while 82% of transplanted patients expressed a desire to meet with donor families. “A large Californian study came up with similar findings, with 70% of donor families and 75% of organ recipients saying they would like to have phone or letter contact with their counterparts,” he adds.

In the United States, the 58 organ procurement organizations that oversee organ donation in all fifty states are unanimous in encouraging communication, according to Mr. Green, which can range from the exchange of anonymous letters to face-to-face meetings.

One of them, Lifebanc, based in Cleveland, home of the world-renowned Cleveland Clinic and University Hospitalsof Cleveland, with whom it works closely, adds another dimension. “The healing power of donation and transplantation is perhaps never more powerful than when a donor family meets the recipients of their loved one’s life-saving gifts,” says its CEO, Gordon Bowen.

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Article written by Reg Green and published in the first page of the Italian newspaper “Il Corriere della Sera” on August 23, 2018

A few months ago I received an email from complete strangers that has haunted me ever since. It came from an English couple, Dave and Debbie Marteau, whose 21-year old son, Jack, was killed in a road accident in Palermo in 2009 and whose organs were donated to three Italian families. Despite repeated attempts in those eight years they have not been able to find out anything about the recipients.

They don’t know if they are young or old, male or female or what they do for a living. They don’t even know if they are alive. Their pain was clear in every line.

The Marteaus wrote to me because my wife, Maggie, and I who are American, donated the organs of our seven-year old son, Nicholas, to seven very sick Italians, after he was shot in an attempted carjacking on the Salerno-Reggio Calabria autostrada in 1994.

Two foreign families, two identical decisions — but in our case the names of the recipients, their pictures and the stories of their rescue from the very edge of death were flashed around world and tens of millions of people realized, many for the first time, that hearts, kidneys, livers and other body parts that would otherwise be buried could instead bring dying people, many of them very young, back to full health.

Everywhere, from Russia and Venezuela to India and Taiwan, the willingness to donate was stimulated. I know because people in all those places have told me they personally were affected. In Italy alone in the following 10 years organ donation rates tripled, a rate of increase no other country has come close to and thousands of people are alive who would have died.

The difference between the two incidents is that in 1999 a law was passed that forbade healthcare personnel from revealing the identity of people involved in a transplant.

The law does not forbid the two sides from contacting each other — it would be unconstitutional if it did – but it has effectively prevented it.

The goal is laudable: to protect privacy and allow the healing process to continue for both donors and recipients. Everyone wants that. The question now is whether the law is being interpreted too rigidly for any family to find information that would help give it peace of mind.

Among other objections, opponents of change often say that if the transplant fails, the donor family may experience again the pain of losing their own loved ones. Maggie and I have personal experience about that. Two of Nicholas’ recipients have died but we have never felt we were losing him again, only the sadness of losing two other brave people with whom we had a bond.

Even then the loss was eased by their families’ gratitude that their loved one had that second chance. After the transplant, Andrea Mongiardo, the boy who got Nicholas’ heart told everyone he now had a Ferrari inside him now instead of a patch-up old jalopy. Valentina Lijoi, a cousin of his, smiled when she told me that story after Andrea died and I told her I feel sure it will make me smile too till my dying day: a beautiful shared moment and surely therapeutic for both of us.

Every country has to decide what degree of connection is desirable but I am convinced that as a general rule letting the two pairs of families, working with their doctors, make that decision offers by far the best chance of success.

In the United States, the two sides can contact each other if both want to – but only if both want to. The first contact is normally by anonymous letter, sent through the hospital, so that neither side can identify the other. The letters are read by their doctors to make sure there are no problems — that one side, for example, is not likely to make demands that the other does not want.

In time, if all goes well, they can reveal their names. Typically, they exchange stories that warm each other’s hearts. The recipients say what they can do that they were too ill to do before the transplant. The donor families describe what the donors’ favorite sports were, if they had children, tell anecdotes.Their doctors are ready to help resolve any friction that might occur and either party can break off contact at any stage.

Elling Eidbo, CEO of the Association of Organ Procurement Organizations, the US government-appointed organizations that administer these programs, says most donor families interact with their recipients in some way. These organizations, which work closely with hospitals all across the country, confirm that in the large majority of cases the results are positive: they help recovery not hinder it.

Can things go wrong? Of course. That’s life. But those occasions are rare. To give just one example: the CEO of one of the most successful OPOs says that in 38 years in his area, which has millions of people, he can remember only two cases of contact causing problems in his area, which includes millions of people. Two! In 38 years!

As a foreigner, it is not my place to make recommendations but I have a question about how the law is being applied: is preventing the few cases that go wrong worth denying every Italian family who wants it the consolation of knowing more about the people who saved their lives or whose lives they saved?

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Reg Green was the chief business writer for the London Daily Telegraph and a freelance commentator for the BBC. Although he specialized in economics, he wrote in his spare time for almost every section of the newspaper, including being the newspaper's jazz critic, writing travel articles, obituaries, book reviews and soccer. After emigrating to the United States he founded and edited Mutual Fund News Service, an investment newsletter. He is the father of Nicholas Green, a seven-year old California boy who was shot in an attempted car jacking while on a family vacation in Italy in 1994. The killing became a worldwide news event when Reg and his wife, Maggie, donated their son's organs to seven very sick Italians, four of them teenagers. They went on to found the Nicholas Green Foundation (https://www.nicholasgreen.org) to promote organ donation to save some of the tens of thousands of deaths around the world caused every year by the failure of one organ that could have been replaced by a donated one.